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Each PH Journey Is Unique, and It’s Not a Competition

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Each PH Journey Is Unique, and It’s Not a Competition

Online support groups for rare diseases like pulmonary hypertension (PH) are essential spaces that offer people comfort. Patient forums and social media groups also can be places of support.

I am involved with the PH News Forums as a moderator, and I believe it is an important safe space. Its users find that they’re not alone, and they can talk to others who have been through a similar experience. This is highly beneficial.

But sadly, I’ve noticed that some members of forums and chat groups tend to compare themselves and their PH journeys with others. Worse, they sometimes downplay another person’s struggle in an effort to demonstrate that they “can top it.” I have seen this occasionally happen throughout the 16 years that I have had PH. And I think we all tend to do it at some point in our journeys.

For example, someone might share a health update or concern, and someone else might reply that their struggles are worse. Or, they might say something else unhealthy, such as, “Well, at least you don’t have [fill in the blank].” Have you observed something like this? When it happens, what do you do?

Like everyone else in the rare disease community, we find ourselves in different groups and stages of our disease. You can read all about my PH journey here. Although other members of the PH community are in the same PHight, our disease has variations, and every intricate detail makes us special. It also explains why treatment is so complicated.

It can be easy to compare ourselves with others. But I believe this is one of the worst things we can do, because it leads to self-doubt. Our health journeys aren’t a race or a competition. We need to support one another. Dealing with PH is hard enough, wouldn’t you agree?

I believe it is crucial for everyone — chronic illness or not — to compete only with the person who looks back at you in the mirror.

Recently, I’ve caught myself comparing my recovery from COVID-19 with others who have the disease. Watching some people bounce back quickly while my recovery takes much longer leaves me frustrated. I must continue to remind myself that this is my journey. Dwelling on the fact that someone else is doing better and recovering more quickly than I am only sets my mind up for negativity. I need to remind myself how far I have come and that I can get through this, too. 

Chronic illness communities are not built for comparisons. We are all unique. Focusing on the positives and avoiding comparisons is crucial. No one should make you feel ashamed about something you share with others. 

Keeping the focus on the person who is sharing and offering them empathy is more comforting for everyone. After all, support groups are created for people to support others. We already have enough chaos in the world.

So, if this happens to you, keep in mind that it rarely is about you. Try not to take it personally. 

In such a close-knit community, let’s support one another with whatever it is that best fits their needs. We all need different types of support. Together we PHight PH.

Stay focused and pay attention to your actions. Practice gratitude as you think of the multitude of blessings you have. As my close friend Jenn constantly reminds me, we each need to offer ourselves a bit of grace.

Have you found yourself comparing your journey with others? Has it affected you positively or negatively? Please share your thoughts in the comments below.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Jen is a columnist and forum moderator for PH News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Jen lives on the Texas Gulf Coast with her husband and mini-schnauzer. Together we PHight stronger.



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